By Jonathan Dicks, CRN President and VP Development
I recently had the privilege of attending the three-night Raregivers Men’s Retreat organized by AngelAid, an incredible organization dedicated to supporting families facing the challenges of rare diseases. This retreat is specifically designed for fathers of sick or deceased rare children and the rare patient perspective as well. This worked to provide safe and nurturing spaces for these men to find solace, healing, and strength among fellow dads and patients who share similar experiences.
Set against the serene backdrop of the rugged Santa Ana Mountains, the retreat commenced on Thursday, June 8th, marking the beginning of a transformative journey for the attending rare caregivers. The three nights unfolded with a carefully crafted program, aiming to address the unique emotional and psychological needs of these remarkable individuals.
At the heart of this retreat were focused therapy sessions that played a pivotal role in guiding us through our grief and helping us navigate the complex emotions that often accompany such profound loss. These therapy sessions, led by expert psychologists and counselors, provided a supportive environment for us all to share our stories, truly express our feelings, and receive compassionate guidance from professionals experienced in the realm of rare diseases.
The program also featured workshops and group discussions, allowing us to connect with each other, forming a tight-knit support network. Engaging in open dialogues, we found solace in knowing we were not alone in our personal struggles. The power of shared experiences allowed this group to forge deep connections and develop lasting friendships, establishing a lifelong network of support that I believe will extend well beyond the retreat.
In addition to therapeutic sessions, the retreat offered various activities aimed at promoting self-care and emotional well-being. Guided meditation, sound baths and yoga sessions provided moments of tranquility, allowing us to find that “stillness” and rejuvenate ourselves. Outdoor activities, such as hiking and functional group fitness sessions fostered a sense of camaraderie and encouraged fathers to challenge themselves physically, boosting their confidence and self-esteem.
Meals were shared in a communal setting, providing an opportunity to bond over our shared journeys and exchange stories and insights. The retreat’s culinary offerings were thoughtfully prepared, taking into account dietary restrictions and preferences to ensure everyone felt nourished both physically and emotionally.
Attending this retreat for the first time, witnessing the profound impact it had was both humbling and inspiring. The Raregivers Men’s Retreat offered a sanctuary where we could freely express our grief, find healing, and gather strength to face the future. It was a testament to the power of community, understanding, and compassion.
The retreat not only gave us tools to cope with the grief and guilt, but also empowered us to honor the memories of our rare loved ones and live life to the fullest, embracing hope and resilience.
To the rag-tag band of brothers who attended this retreat, may the connections formed, the healing experienced, and the newfound strength carry you forward on your journey. And to AngelAid, thank you for organizing such a remarkable event, offering solace and support to these remarkable men who have faced unimaginable challenges with grace and courage.